Hello everyone

[Hithereeveryone]

Hi everyone sorry to be here again,I'm just so frustrated and don't know what to do. My husband has decompensated liver cirrhosis. His recent bloods are not good from what I can tell, (the doctor is not interested in explaining then to me)

My husband is now exhausted all the time, doesn't really want to eat and just generally struggles, I hate to see him like this and I often feel I am not doing enough, I have 3 children aswell as being a carer for my husband. I have tried talking to his GP and his specialist but to no avail. I'm pretty sure he should be on some kind of meds to help him but I don't know what, he was supposed to see a nutritionist but that hasn't come through either. Bim just at a real lose and am so scared that he won't be with us for to much long.

I'm really sorry to go on but I think I just need some friendly advice and some one to tell me it will be OK in the end.

[BritishLiverTrust14 Moderator]

Dear Hithereeveryone,

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday 9am to 4pm on 0800 652 7330 excluding bank holidays.

We also facilitate a range of virtual support groups for people in the UK living with a liver condition (and their families and carers). If you would find it helpful to speak to others with shared experience, you can register to join a group here:

britishlivertrust.org.uk/vi...

Best wishes,

British Liver Trust

[Lavender-Pearl]

lovely, I have so been where you are and I can really recommend you phone the Liver Trust Support Line. They can give you so much, they can listen and give you advice to help you find away forward.

My husband is 2yrs post transplant this June and I so very nearly lost him. It is a hard journey whatever way you look at it. You can do it, never be sorry for asking for help you need all you can get. Speak with you GP as you can get a Social Prescriber who can support and help you too.

Wishing you all the best, thinking of you, sending love and hugs x

[Hithereeveryone in reply to Lavender-Pearl]

Thankyou Lavender pearl, I really appreciate your comments I'm so happy to hear your husband is on the mend, I just seem to have doors closed in my face all the time. I will ring the support line today. What is a social prescriber?Sending the love and hugs straight back to you too x

[Lavender-Pearl in reply to Hithereeveryone]

Hi lovely, a social prescriber is someone you can be referred to speak to your surgery they will know how to get one for you. The Social prescriber helps with all sorts of things including benefits your can apply for, Blue Badge advice, they are there to help you. They point you in the direction of what’s available to you and they listen too, I have to say mine helped me so much through the fog. They can call you or you can see in person, I found by accident but well worth it,

Take care of yourself too so important as your are the carer of all around you xxx

[Readlots in reply to Lavender-Pearl]

Good advice - a GP based social prescriber will have local knowledge

[Breakfastbabe]

I feel your worry love. I found the BLT nurses and online support group for carers really helpful. It's so hard I know, but you have to stand your ground with the medical professionals even if you feel you are being a nuisance. If you speak to a BLT nurse they will give you a list of questions to ask and I found that gave me more confidence when dealing with doctors as I felt I had more authority being well informed. My husband came back from being in a bad way through diet and medication and although life is still a little bit of a rollercoaster we lead a pretty normal life. There is hope but don't forget to take care of yourself too.

[ColinH324]

It does seem that you have to become a pain in the rear to get things moving. I email and call to chase up for referrals until things finally get done. Fortunately I am now with a good GP and team at Kings Hospital, so I don't hit too many hurdles. It can be difficult when first starting out - have you asked the specialists secretary to get them to contact you? In the past I used to phone/email the secretary and they would get the consultant to call me, or make an appointment. You may need to have your husband with you to tell them that he is happy for you to discuss things on his behalf.

[Readlots]

Hi, could your husband ask the GP and consultant to talk to you? They may need his consent.

I found the community nurse team was fantastic, you can ask your GPs for if the community nurse can come out to you. They sorted out referrals for all the help we needed for my Mum.

Hang in there, you’re not alone x

[Hithereeveryone]

You are all such wonderful and lovely people, I thank each and every one of you for replying and it makes me feel a little better knowing I'm not on my own. I find it very hard to take care of 'me' I am also a mum of 3 and all my children have 'issues' themselves, 1 has hypermobility with full body pain, 1 is going through an ADHD assessment and is finding things tough at the moment and 1 has constant stomach ache and hypermobility. I'm so tired by the end of the day. I do have the authority it to talk to all the medical people we are involved with. We spoke to the specialist yesterday and has finally booked in a scan 3 months over due. I will definitely look into the social prescriber thing. Where should I look for that?Again I just want to say thankyou to this very kind and caring group x